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Methods for Understanding the Diagnostic Moment 143
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As a matter of fact, Blaxter’s role was narrative, as she assembled the
bits and pieces of diagnosis produced by diagnostic technology and
various specialities. Her experience of the process of diagnosis was
fragmenting:
The body is divided up into different organs and systems, each of which
has to be looked at separately and serially. However, within medicine,
many of these will have different specialists, departments, outpatient clin-
ics, places within a hospital, or even different hospitals.
15
With each movement between diagnostic locations, Blaxter would provide a history to the new clinician who would be bringing in a different
view of a particular part of her body. In her retelling, she would draw
the fragmenting images and specialities back together – and perhaps,
“differently” together – for the new clinician. Each image would have
frozen a particular instant, a particular position of her body that needed
to be woven back into a moving, active whole. Yet, at the same time,
the fragmented images of the inside of her body shaped for Blaxter the
experience of being ill and offered her a way of owning the experience,
a sensation depicted in the historical poster (figure 7.1).
Blaxter’s intellectual documentary offers some critical sense-making
tools about the social aspects of the diagnostic process. These social
aspects are quite different from the psychosocial factors that generally preoccupy the clinician. The latter are often most concerned with
micro-level factors that influence the individual patient: patient entourage, support structures, work, and leisure settings. Blaxter’s work,
on the other hand, encourages the critical scholar to explore organizational factors, beyond the individual doctor and patient. In line with
Blaxter’s impressive body of sociological work, she positions her research concerns outside of her individual case of how P and P’s doctors
interact and focuses instead on “the nature of ‘evidence’ in a world
where neither the individual doctor nor the patient, but rather the
measurement and the image, were increasingly becoming the vehicle
of decisions.”
16
While decision making may take place at the level of the individual
clinician-patient dyad, frameworks and contexts for this decision making are positioned in institutions well beyond these individual actions.
Protocols and formal guidelines, themselves buttressed by evidencebased practice; multidisciplinary team systems, and inter-specialty social conventions are points at which social forces shape the diagnostic
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7.1 X-rays and diagnostic imaging creates a representation of a
fragmented inner self. [Office for Emergency Management. Office of
War Information. Domestic Operations Branch. Bureau of Special Services.
(03/09/1943 - 09/15/1945). Credit: [Public domain],
via Wikimedia Commons]
Methods for Understanding the Diagnostic Moment 145
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process. Their hierarchies, politics, power, influences, and histories are
hidden from view but pivotal to the social understanding of diagnosis
as experienced in Blaxter’s case study. As she concludes “in modern
medicine it is much more important for sociology to study what Cussins called the ‘ontological choreography’ of these ever more complex
systems, including the way in which images and records appear to create and control both medical practice and the patient’s medical experience. This is what actually counts.”
17
How do words work in the experience of diagnosis? What are the
linguistic ramifications of how we talk about disease? Suzanne Fleischman uses her personal experience of the haematological disorder
myelodysplasia syndrome as a starting point for exploring the “linguistic
construction” of disease. Fleischman was a professor of linguistics in
the department of French at the University of California (Berkeley).
In 1993, she received her diagnosis, as she explains it, as “a quirk
of fate.”18 As I described in the opening paragraphs to this chapter,
Fleischman experienced her own diagnosis as transformative. She was
seemingly excellent health, but “out of the blue, my life plan was radically altered, my future thrown into question”19 she wrote. As a linguist
seeking to make sense of her own experience, she wrote this paper to
reveal “the meanings and metamessages tucked away in the recesses
of … language.”
20
Fleischmann, unlike the other authors included in this chapter, points
out, as I did in chapter 1, the fluid nature of diagnostic categories. To
say that one has this diagnosis or that diagnosis is not necessarily to be
clear about the exact nature of the ailment. Myelodysplastic syndrome
is an umbrella diagnosis that captures numerous types of disorders.
While the differences may be significant, patients have only one way
of speaking about their illness. In this composite category, the diagnostic term obfuscates rather than clarifies what ailment afflicts the individual. The name matters, writes Fleischman. It confers existence by
“creat[ing] a ‘thing’ to which one can subsequently make reference, out
21
of the seamless data of the physical and experiential world.”
.
But in the case of myelodysplastic syndrome, the name is barely recognizable outside of the specialized world of haematology, explains
Fleischmann and that is because of the rarity of the diagnosis. “You
have my-low-what?” squeal her interlocutors when her disease comes
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up in conversation.22 In the absence of lay consciousness of a particular
diagnosis or its features, the diagnosis fails to provide a sense of identity or of community, both expected outcomes of the diagnosis.
Disease is, at the same time, a collective and an individual experience. Fleischman punctuates this with a discussion of the illness-disease
dichotomy. Illness is how the people feel in themselves – physically,
emotionally, functionally, and dysfunctionally – while diseases are
“conceptual entities, categories of clinical taxonomy.”23 These distinctions are reproduced in syntax, where the relationship of the individual
to her pathology is embedded in the way she speaks about her illness
and her disease (“I am diabetic” versus “I have diabetes” or “I suffer
from diabetes”).
Parts of speech provide shape to the way we can talk about diagnosis. The noun makes of disease a more solid object, gives it a more ontological existence and more concrete boundaries than – as I exposed in
chapter 1 – are actually the case. But nouns do more than this, explains
Fleischman:
Nouns congeal what is essentially a process into a static state that becomes
superimposed on the individual rather than the individual being con-
strued as an integral part of the development of the disease.
24
Verbs, on the other hand, are more frequently associated with the
process of acquiring of disease and tend to be both euphemistic and
passive. Falling ill, getting (or taking) sick, coming down with something,
leave the individual out of the equation, while catching a cold implies
a bit of participation, as if the person should have prevented the infection. Fleischman refers to these as “inceptive” verbs and ponders how
they symbolically demarcate the transformative power. When does one
get, come down with, or catch progressive diseases such as her myelodysplastic syndrome, when the onset of the pathology is often well in
advance of any symptoms? The utterance is the moment one becomes
aware, when the impact is made, but not the moment at which the disease is acquired. As a linguist, Fleischman also underlines the many
metaphors of battle which are reserved for bad diseases which “strike”
us.
The question of metaphor is one which had been previously raised,
25
and dealt with by Susan Sontag in her seminal Illness as Metaphor.
It
was in 1978, facing a cancer diagnosis of her own, that Sontag decried
the battle metaphors that dominated her (and other) clinical discussions
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of cancer in particular but illness in general. A literary theorist, she
demonstrated the degree to which ill-chosen metaphors create fantasies
about diseases and add greatly to patient suffering. Her book was also
about reclaiming. She explained that “the healthiest way of being ill – is
the one most purified of, most resistant to, metaphoric thinking … It is
toward an elucidation of those metaphors, and a liberation from them,
that I dedicate this inquiry.”
26
Euphemism, as well, contributes to the linguistic construction of diagnosis. Given the transformative power of the diagnostic utterance
that Fleischman has so aptly described, and rendered more powerful
still because of her dual position as diagnosed and as linguistic, euphemisms provide some mild dilution. In the same way that the diagnostic categories break the continuum of nature into manageable chunks
(see, notably Zerubavel27 on this), euphemisms make them emotionally
manageable.
She also writes about the occupational registers that frame diagnosis.
These registers are the way specialists talk among themselves but are
not very helpful for people outside of the speciality. With respect to
diagnostic language, there are interesting appropriations (and misappropriations!) of the technical language. Davison and his colleagues
reported how laypeople adopted an epidemiological affect and language to describe disease risk, even when their explanations were far
removed from those of the medical experts.
28
What do patients understand of this foreign language, this occupational register? Do they start speaking like a tourist to Europe with
school-girl French and no sense of the subtle cultural differences between speakers of English and French, or do they give up trying to
understand, living instead in isolation in the small remnant of a world
they do understand? This is particularly challenging when specialized
terms in the medical world have other meanings in the vernacular.
Fleischman explains that while “indolent” sounds like laziness to the
layperson, in reference to a serious diagnosis, it’s actually good news:
the condition is moving slowly.
Fleischman underscores that whatever social meanings we give to a
particular body part – heart, brain, marrow – will transfer over to diseases of those parts. She concludes: “When one suffers from a serious
illness, the affected organ or body part is never just a body part. It carries multiple layers of culturally-determined associative meaning.”
29
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Havi Carel is a professor of philosophy at the University of Bristol in
the United Kingdom. She was diagnosed with a disease perhaps even
more rare than Fleischman’s called lymphangioleiomyomatosis. This disease with a 25-letter name was not one that lay dormant, discovered
by a random blood test, it was one which was announced first by a significant change in Carel’s functional abilities which incited her to seek
medical attention. Her fitness faltered, she struggled to ride her bike,
to climb stairs, to do those things she normally did with ease. In “With
Bated Breath”30 and Illness,31 Carel describes how her diagnosis was
pivotal to her experience of illness, but as much as the diagnosis was
a disruptive and traumatic experience, it was also a moment at which
new possibilities were opened to her.
As she describes her experience of illness, her discovery of disease,
her perception of newly discovered limitations in her actions and in
her future potential, she offers a philosopher’s view of diagnosis which
she goes so far as to describe (in Epicurean terms) as “therapeutic” –
like a medicine. For Carel, diagnosis transforms the illness experience.
No longer is it “a private musing on the nature of bodily change, but
an item in a medical vocabulary and ontology, to which shared meanings and knowledge are attached.”32 And with this comes some of what
we discussed in the introduction. There is a “sense of having an objective and known condition releases at least some of the sense of shame,
guilt, and inadequacy that may characterize earlier stages of symptom
experience.”
33
The transformative power of the diagnostic label is typically cast in
terms of “closed possibilities” as so many of the narratives we have visited together either enunciate clearly or imply. It’s the gavel, the scalpel,
the enduring boundary between before and after. For Carel, it was that
the “list of things given up and crossed off may become ever longer as
time goes by, cementing the sense of closure. This was for a long time,
the sole paradigm in descriptions of illness: loss, the breaking of identity, disruption of narrative, and disruption of lived experience.”
34
It is the link between diagnosis and prognosis that creates this closure; it is the notion that our days are limited. However, Carel points
out that this was always already the case. It is the notion of finitude that
shapes our life.35 She draws on a range of models to illuminate this idea
and to explore how diagnosis opens up possibilities in a life which was
only ever going to be finite anyway.
Michel de Montaigne, the French renaissance philosopher and statesman wrote that the goal of philosophy was to learn how to face death
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with equanimity. Our contemporary way of living tends to encourage
us to avert our thoughts from the problem of death. But the disease
and its associated diagnosis puts the notion of death firmly in our view.
It provides, according to Carel, an opportunity to live reflectively and
achieve this philosophical goal.
Drawing upon both Heidegger, a twentieth-century phenomenologist, and the ancient Greek philosopher Epicurus, she presents us with
models for accepting death, and for using diagnosis as a means by
which we are achieve equanimity. The diagnosis opens us to vulnerability and to dependence, both of which provide us with possibilities
for more fully experiencing our life. “Accepting that the human project
is towards death, that death structures our life, we are freed up in in
our ability to be.”
36
The Heideggerian approach that Carel presents is concerned with
how death structures our life and shapes our existence. Every living
moment “should be understood as unique, irreversible and as bringing
us closer to death … there are no second chances. I can never repeat
today.”37 It is only in relation to its finitude that life makes any sense
at all. Yet that finitude is often offered only to those who are forced to
look at it, as, for example, in the revelation of a dire diagnosis. In this
way, the diagnosis is a sense-making device, not only in relation to the
symptoms it organizes, but also in relation to the life that it potentially
curtails.
Carel also turns to Epicurus, whose philosophy is different from Heidegger’s but also directed towards the problem of approaching death
with tranquillity, or as he calls it, ataraxia. He believes that we should
worry only about things we experience, and we cannot experience
death. An individual might worry about dying, and associated suffering, but that is a different state of affairs. We will either suffer briefly,
in which case, it’s not such a big deal; it will cease. Or we will suffer
chronically, a state to which we can adapt.
Epicurus maintains that happiness comes from things for which we
have the capacity within ourselves. The more we find happiness from
our own self-sufficiency, such as in friendship and in relinquishing the
fear of death, we become located in the “here and now, cherishing the
present and not being preoccupied by plans and projects.”
38
Epicurus thought of philosophy as “medicine for the soul,”39 and
Carel uses a philosophical approach not only to make intellectual sense
of the dire diagnosis that is otherwise abstract for many of us, but she
has experienced first-hand, but also to provide a different means for
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understanding diagnosis than we generally afford it in contemporary
and popular culture. She proposes philosophy as therapy. Learning to
live with illness, is, she writes, “learning to be happy now, regardless of
threats to our future.”
40
In her “Pink Ribbons and Public Private Parts” article, Martha Stoddard Holmes anchors her analysis of her own ovarian cancer in the
study of popular culture and literature.41 Professor of literature and
writing studies at California State University, Stoddard Holmes focuses
on how we come to imagine what it is to have a particular diagnosis. She
was diagnosed with ovarian cancer after seeing her GP, feeling guilty
about not having had a check-up in a long time, and not being really
sure if she had something wrong with her or not. Stoddard Holmes’s
doctor palpated her abdomen as part of the check-up, felt something
that she didn’t believe should be there, and sent Stoddard Holmes for
emergency diagnostic imaging, which located two large tumours. As
Stoddard Holmes relates the story of this diagnostic journey, she ponders that even as she narrates this diagnostic episode, she is telling a
story in retrospect. The diagnosis allows her to look backwards and reinstil events and sensations pre-diagnosis with diagnostic portent. At
the time, they were just messy things that were there but not important.
They got better, or they were weird, but with the diagnostic moment
came Stoddard Holmes’s capacity to link them, make them cohere, explain their oddities.
But what if she had been able to make sense of this earlier? she
muses. She knew there was something interesting in her abdomen. To
read her account, however, it would appear that she didn’t think of it
as potentially life-threatening. What is ovarian cancer after all? How
would it be part of the consciousness of any given woman? These
organs, so deeply hidden in a woman’s body, and usually only considered in the context of childbearing and menstruation, disappear in
public and individual consciousness. These are not the breasts with
which we are obsessed, which are part of a pink ribbon campaign
and celebrity revelations. As Stoddard Holmes writes, “few of us
ever imagine or actively experience the ovaries at all unless we have
42
a compelling reason to do so.”
She adds she had no idea of their
size, “nor could [she] locate them unless a medical professional was
palpating them.”
43
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Stoddard Holmes’s intellectual documentary is one in which she
explores the popular rhetoric of organs and diagnosis and its role in
creating a public imaginary. Diagnoses that are seen as “silent” or
“symptomless” may actually be diseases for which individuals have
no means of imagining. To think about what’s happening inside our
bodies we need, she explains, a “triangulation” between our sensations
and a news report, a film, or a public health campaign. It is being able
to imagine these sensations into the concrete diagnostic category that
compels us to seek medical attention and take steps towards treatment.
As a scholar of popular culture, Stoddard Holmes invites her readers
to consider the “artefacts” of diagnosis: visual cues, symbols, clinical
signs. The pink ribbon of the breast cancer awareness campaign gives
“the public a way to picture cancer without actually picturing cancer –
or even a way to actively non-think cancer – the ribbons and bracelets
may effectively neutralize the stigma of the person with cancer and return him or her to the human circle.”
44
But what of ovarian cancer, this disease so hard to imagine by virtue
of its location and its inconspicuousness? What is its place in popular culture? Stoddard Holmes reminds us (if we ever even knew) the
names of some prominent individuals who were diagnosed with ovarian cancer: Coretta Scott King, Gilda Radner, and Laura Nyro, she tells
us. She highlights the memoir of Liz Tilberis (No Time to Die: Living with
Ovarian Cancer). Stoddard Holmes brings to our attention the National
Ovarian Cancer Coalition’s Walk for the Whisper and its teal ribbon
(which hasn’t retained the same impact as the pink one of breast cancer). She points out ovarian cancer in Wit (see our discussion of this in
chapter 5) in the television show Thirtysomething and in one episode of
Grey’s Anatomy, and in Richard Powers’s novel Gain.
There are therefore some public narratives about ovarian cancer but
not many. That there are so few cannot be explained, maintains Stoddard Holmes, by the relative incidence of ovarian cancer in relation to,
for example, breast cancer. After all, ovarian cancer is the fifth cause
of cancer deaths among women. Stoddard Holmes reflects on historical and cultural approaches to gender and to women’s health and proposes that ovarian cancer “acts as an intensification and focalization of
45
a superpathological site inside the already diseased female body.”
As
Fleischmann had suggested in her own essay, like any other body part,
the ovaries carry culturally determined meaning, in this case, perhaps
of the hysterical woman, always potentially ill (see Patricia Vertinsky’s
“The Eternally Wounded Woman,”
46
which reveals how menstruation
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was historically cast as rendering Victorian women lesser-than and
more feeble than men).
Stoddard Holmes’s work illustrates the incredible importance of the
discourses available to the general public to make sense of the precursor symptoms of potentially serious diseases. While on the one hand
her work could be made mandatory reading in Public Health 101, it
also serves another important function. When we have fear or deliver
(in the case of clinicians) particular diagnoses, we would do well to
devote time to understanding their popular representation as much as
their pathophysiological or epidemiological meaning. To have, or to deliver, a diagnosis requires the capacity to imagine what is going on, and
that imagination is grounded in popular culture.
There are, of course, many other powerful illness narratives, while in
the absence of methodological approach for understanding the diagnosis, still paint rich accounts of the diagnosis and its impact. Audré
Lorde’s The Cancer Journals was originally published in 1980. In the
pages of this book, the renowned poet, feminist, lesbian, and activist
wrote of her experience of breast cancer diagnosis and mastectomy. She
wrote that “feelings need voice, in order to be recognized, respected
and of use”47 and to overcome the “commonality of isolation and painful reassessment which is shared by all women with breast cancer.”48
Her story of diagnosis is one of community and solidarity. She woke
up from general anaesthesia after a biopsy, aware, as she put her hands
to her chest, that the surgeon must have found cancer. Her doctor had
said he would biopsy both breasts if he found a malignancy in one; she
could feel the dressings on both breasts. It was a giveaway. “It is malignant, isn’t it, Frances, it is malignant,” she queried her lover.
Art Frank calls Lorde’s narrative one of resistance. It is shaped by who
Lorde is, by her affiliations, her identity. That she is African-American,
queer, and female gives voice to different possibilities in the diagnosis
story. It gives a “horizon
… within which aspects of the world are selected for attention, and what is selected is evaluated”49 even though
she draws, nonetheless, on pre-existing narrative resources: authentic
though her account might be, no illness narrative, Frank argues, is ever
strictly individual.
50
Rita Charon explains that narratives demonstrate “how critical is the
telling of pain and suffering, enabling patients to give voice to what
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